Microcephalic osteodysplastic primordial dwarfism types I and III

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ORPHA:2636OMIM:210710Q87.1
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1Active trials1Specialists8Treatment centers

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Overview

Microcephalic osteodysplastic primordial dwarfism types I and III (MOPD I/III), also known as Taybi-Linder syndrome, is an extremely rare autosomal recessive disorder characterized by severe intrauterine and postnatal growth restriction, microcephaly, and skeletal dysplasia. Types I and III were historically described separately but are now recognized as the same condition. The disorder is caused by biallelic mutations in the RNU4ATAC gene, which encodes a small nuclear RNA component of the minor spliceosome, essential for proper mRNA splicing. Affected individuals present with severe prenatal-onset dwarfism, marked microcephaly with a sloping forehead, sparse hair, dry and wrinkled skin, and distinctive facial features including a prominent nose and micrognathia. Skeletal abnormalities are prominent and include short bowed long bones, platyspondyly (flattened vertebral bodies), and metaphyseal flaring. Brain malformations such as lissencephaly, agenesis of the corpus callosum, and cerebellar hypoplasia are frequently observed. Additional features may include low-set ears, short limbs, and intellectual disability in those who survive. The prognosis for MOPD I/III is very poor, with most affected individuals dying in infancy or early childhood, often within the first year of life, due to complications including recurrent infections and respiratory failure. There is no specific curative treatment; management is supportive and symptomatic, focusing on nutritional support, management of infections, and addressing individual complications as they arise. Genetic counseling is recommended for affected families.

Also known as:

Clinical phenotype terms— hover any for plain English:

HydroureterHP:0000072
Inheritance

Autosomal recessive

Passed on when both parents carry the same gene change; often skips generations

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗OMIM ↗NORD ↗

FDA & Trial Timeline

1 event
Aug 2024Study of the Pathophysiology of RNU4ATAC and RTTN Associated Syndromes

Hospices Civils de Lyon — NA

TrialRECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for Microcephalic osteodysplastic primordial dwarfism types I and III.

1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.

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Clinical Trials

1 recruitingView all trials with filters →
N/A1 trial
Study of the Pathophysiology of RNU4ATAC and RTTN Associated Syndromes
N/A
Actively Recruiting
PI: Sylvie MAZOYER, Dr · Sites: Bordeaux; Bron +4 more

Specialists

1 foundView all specialists →
SD
Sylvie MAZOYER, Dr
Bordeaux
Specialist

Rare Disease Specialist

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

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Latest news about Microcephalic osteodysplastic primordial dwarfism types I and III

Disease timeline:

New trial: Study of the Pathophysiology of RNU4ATAC and RTTN Associated Syndromes

Phase NA trial recruiting. Blood samples

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Common questions about Microcephalic osteodysplastic primordial dwarfism types I and III

What is Microcephalic osteodysplastic primordial dwarfism types I and III?

Microcephalic osteodysplastic primordial dwarfism types I and III (MOPD I/III), also known as Taybi-Linder syndrome, is an extremely rare autosomal recessive disorder characterized by severe intrauterine and postnatal growth restriction, microcephaly, and skeletal dysplasia. Types I and III were historically described separately but are now recognized as the same condition. The disorder is caused by biallelic mutations in the RNU4ATAC gene, which encodes a small nuclear RNA component of the minor spliceosome, essential for proper mRNA splicing. Affected individuals present with severe prenata

How is Microcephalic osteodysplastic primordial dwarfism types I and III inherited?

Microcephalic osteodysplastic primordial dwarfism types I and III follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Microcephalic osteodysplastic primordial dwarfism types I and III typically begin?

Typical onset of Microcephalic osteodysplastic primordial dwarfism types I and III is neonatal. Age of onset can vary across affected individuals.

Are there clinical trials for Microcephalic osteodysplastic primordial dwarfism types I and III?

Yes — 1 recruiting clinical trial is currently listed for Microcephalic osteodysplastic primordial dwarfism types I and III on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Microcephalic osteodysplastic primordial dwarfism types I and III?

1 specialists and care centers treating Microcephalic osteodysplastic primordial dwarfism types I and III are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.